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cure finder

New member
Joined
Aug 11, 2009
Messages
2
Reason
Loved one DX
Diagnosis
03/2009
Country
US
State
florida
City
orlando
My only sibling, my handsome younger brother, has PBP and is going down fast. Today I got to watch him choke on a chunk of food that he didn't even know was in his throat. I spend most of my time crying and asking why.
To me, this is the most evil disease on earth and I wonder why more isn't being done. It took 2 years to diagnose my brother, going from doctor to doctor and never getting so much as a pat on the back, forget about any medication. I thought to myself what a silent terror he must be in! He couldn't even communicate his fears, plus one "brilliant" neurologist " told him he had a "heroe's disease". What the heck is that?
When Obama was elected he immediately lifted the ban on stem cell research, I saw a news item where a man with a defective heart valve was given stem cell therapy and he generated a new healthy valve. Why isn't this being done for PBP and ALS. I just found out that Stephen Hawking has been living for 40 years with ALS, how come the rest of the poor slobs have a 5-8 year prognosis? If there is something available, why can't people get it, they have absolutely nothing to lose. I would like for everyone with this disease to get angry and loud and demand something.
So many Iraqi war veterans come home only to find out a couple years later, that in addition to being traumatized for life by war, now they are going to die from ALS. What a reward for service to country!
Somebody here has to know what to do, we need action and we need it now! I am ready , willing, and able, tell me what to do. I am looking for doctors and researchers who will use stem cell therapy on my brother and all victims of this horrible disease. I'm scared, I'm angry, I'm half crazy with fear and anxiety, and I don't know where to start. I'm hoping someone will read this and be able to point me in the right direction as to how to draw attention to this horrible disease and find immediate tretment for sufferers of ALS and PBP. Lets all band together and demand immediate attention!
 
i am with you as i think everybody here is i am new also it is my son who has the als other people have been here a long time trying to do as you ask . it dont affect as many people as cancer, strokes , and heartattacks and aids and m.d. they get the most attention it is so unfair
 
You said it...let me know what to do! Its too late to save my mom, but can't we save the countless others that are going to suffer from this hell on earth?
 
I am with you also. My mother has PBP symptoms of which started 2008 may and are only getting worse.
 
Standing right alongside all of you, shoulder to shoulder-heart to heart! Have you joined the ALS Advocate on the ALS Association web page? There is power in numbers!
 
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